A brave mum from Edinburgh has told how she underwent major surgery after persistent ear and throat pain turned out to be cancer.
Julie Baker, 50, from Oxgangs went through a life-changing experience when she was first told pain in her ears and throat was an infection in February 2022 but after further tests, was diagnosed with throat cancer.
READ MORE - Edinburgh woman turned up for to shift at care home after drinking alcohol
Shortly after the devastating diagnosis in August following biopsies, the mum was also told she would have to have her food pipe and voicebox removed in order to survive the illness.
Laryngeal cancer is a type of cancer that affects the voice box. The larynx is part of the throat found at the entrance of the windpipe (trachea).
This part of the throat plays an important role in helping you breathe and speak and in serious cases the most successful treatment is to remove most parts of the throat which was the shattering news the mum received last year.
Speaking to Edinburgh Live she said: "I noticed something around June last year, I had pain in my ears and throat and went to doctors who said it was an infection so was given antibiotics but it didn’t clear. I kept going back so they referred me to ENT at the Lauriston building.
"I was told I had neuralgia but I wasn’t convinced and asked to go back again after the medication they gave me wasn’t helping. I had previously had non-Hodgkins Lymphoma in 2007 on the same side of my neck and thought it had returned.
"I eventually got a camera inserted into my nose and they said there was swelling on my vocal cords so referred me for a biopsy at St John’s.
"After the biopsy, I was diagnosed with Laryngeal Cancer and told I would need to have my vocal cords and voice box removed along with my oesophagus (food pipe ) as the cancer was also there as it’s all connected to some extent."
The mum-of-three who also has three grandkids has a close-knit family and support system in place that helped her digest the shocking news.
She said: "While waiting for the operation the pain in my ears and neck was increasing and my breathing was affected and my ability to swallow was getting harder.
"Eventually, I had a full laryngectomy in late August along with the removal of the oesophagus and this was rebuilt from tissue taken from my right thigh to enable me to eat and drink again.
"While waiting for the Laryngectomy I had a tube in my nose that I used for medication and for eating my feeds as I was unable to swallow because of the swelling inside.
"After surgery, it was a peg tube from my stomach until I was able to eat soft foods. I’ve only recently had this removed and still have a dressing covering the hole."
Julie has gone through a gruelling journey since diagnosis but still sees the positives and has taken recovery in her stride as she gets back to normal life.
"I had a CT scan a couple of weeks ago and I’m all clear, I will get three-month checks for around a year but fingers crossed that it doesn’t return again," she said.
Julie has now had to adapt to relearning how to speak, eat, and communicate following the huge change.
She continued: "I have a speech valve which is a device which allows me to speak using air from my lungs back up through the valve and this allows me to produce sound. I have to press the valve to open the flap inside using a breath which creates the sounds.
"I am currently trialling a new device which is called a speakeasy device which I can manually open and close myself, when it’s closed I can speak without pressing the device or I can have it open and cover the hole that’s on it to speak also, but this is new so I’m still getting used to using it.
"I can’t sleep with the new speakeasy device as if it closes when sleeping it could affect my breathing so need to use the one that needs to be pressed to sleep in.
"As you can imagine the stoma hole is open so with no cover then there’s a chance of getting stuff in it which also gives you a risk of infection so I was advised by medical professionals to use the HME devices."
After having surgery to remove the voice box patients will no longer be able to speak or breathe in the usual way. Instead, patients like Julie breathe through a permanent hole in their neck (stoma) and go through extra treatment and speech and language therapy to help them communicate.
This can include a valve being placed in your throat, or using an electrical device you hold against your throat to produce a sound which Julie now uses to communicate with her family.
Julie can still eat and drink most things normally thanks to innovative surgery that allowed surgeons to recreate a new food pipe with part of her thigh.
The mum explained: "I now breathe through the stoma hole so need to keep this clean and free of infection as much as I can.
"As for eating I can drink as normal and can eat normally to an extent but now need to be careful with the textures of food and advised to eat softer foods, to chew smaller bites and to drink after mouthfuls to allow food to pass through the new food tube that was constructed.
"The food tube is not the same as a normal oesophagus and it is narrower so that’s why I’m advised to eat softer foods, smaller bite sizes and to ensure I chew food up and swallow small bits."
Julie has three grandchildren who are ten, eight and one - and described how they adjusted to the huge changes in her life.
She said: "The changes have been hard for my grandkids I think, especially when I couldn’t speak for so long. My granddaughters have autism also so communication is a big part of their lives and more essential to their understanding of life.
"But they both asked a lot of questions and wanted to know what was happening to me, the good thing which I’m extremely grateful for is they weren’t afraid to see me or afraid when I got my new voice as I call it as that was something I was afraid of.
"My grandson is only one so he’s not any wiser, I couldn’t communicate with him at all when he was tiny but now he’s absolutely fine with me he’s not scared of my voice and will grow up not knowing what my voice was like before.
"I have nieces and nephews who are young too who have all been amazing and have wanted to know everything too, none of them has been afraid of anything or of my new voice and has taken it all in their stride.
"I have a nephew who will be seven soon and he has autism and is higher functioning on the spectrum than my granddaughters but he thinks my voice is funny and interacts more with me since I’ve had my new voice which I find endearing."
Through the incredible journey Julie has undergone to save her life she says family brings her the strength to wake up each day and fight on.
She explained: "I carry on for my kids and grandchildren and my partner who I’ve been with for 11 years and of course rest of my family.
"I have my dad, his partner and stepbrother who live in Kuwait but have supported me from afar and did come over for a while while I went through surgery.
"But here I have an amazing mum and three sisters who have been a strength to me along with my older niece Lauren.
"I have an amazing group of friends too, we call ourselves the A-Team and they have been a tower of strength along with my family. I’m lucky to have such a great support network in my life."
Sign up for Edinburgh Live newsletters for more headlines straight to your inbox
Even after going through unimaginable changes Julie wanted to help others in her situation and raise awareness for Laryngeal Cancer and raised money for patients going through the same surgery.
She said: "My niece Lauren, my kids and my sisters had arranged a fundraising page to get me a holiday. As a way of saying they were proud of me for arranging the fundraiser that I organised in my local pub to raise funds to buy writing boards for other laryngectomy patients.
"I and others held darts and dominoes tournaments at The Good Companions pub along with two separate sponsored walks to raise the funds, and we were totally blown away by the support from everyone we knew.
"I raised £5411 to get the boards which will be donated to the speech and language teams at St John’s hospital. They are going to include them in information packs they give to patients before surgery.
"As we raised so much I want to give £1000 to the Maggie Centre Edinburgh as I’ve also received support from them during my cancer journey."
You can give find out more and donate to the fundraising page here. You can also find support if you or someone close to you is going through a similar experience here.
READ NEXT -
Heartbroken Midlothian woman's struggle to cope with loss of stillborn twin
East Lothian dad chases thieves down the street after they steal his motorbike
Edinburgh dancers need to raise £14,000 so kids can compete in Dance World Cup
Edinburgh and Lothian traffic chaos as busy M8 slip road closed for five months
American air hostess admits embarrassing Edinburgh blunder as she visits city
